Abstracts

Call for Poster Abstracts

We would like to encourage patient organisations, academics, health care professionals and all other interested parties having conducted research or studies on rare diseases or public health projects to submit a poster abstract to the ECRD 2014.

The themes mentioned below suggest issues and topics the Poster Committee would like to have addressed and should serve as a valuable guide as you develop your poster abstract.

You are invited to submit poster abstracts that fall within the following themes:

  • Theme 1: Improving Healthcare Services. Reports on experiences and best practices; initiatives on how to improve healthcare pathways;  advances / breakthroughs for undiagnosed conditions; initiatives on how best to organise diagnostic services at national and European level; experiences and best practices on genetic testing / genetic counselling / new born screening.
  • Theme 2: Knowledge Generation & Dissemination. Reports and outcomes of national and European rare disease specific patient registries; use of hospital computerised systems to increase knowledge of rare diseases; methods of evaluating the quality of the helpline from the point of view of the caller; good clinical practice guidelines; examples of successful awareness-raising campaigns for a rare disease(s).
  • Theme 3: Research from Discovery to Patients. Examples of resource sharing among different stakeholders to help shape rare disease research policy in Europe; examples of public-private initiatives to address the gaps in research and create opportunities; breakthroughs in medical need driven research; examples of social research in the field of rare diseases.
  • Theme 4: State of the Art and Innovative Practices in Orphan Products. Examples of new international initiatives having an impact on the development of orphan medicinal products in Europe; recommendations on how to improve access to orphan medicinal products; initiatives on how to stimulate data collection for off-label use and access to therapies; education & training initiatives in medicines development for patients’ representatives.
  • Theme 5: Emerging Concepts & Future Policies for Rare Disease Therapies. Examples of non-traditional routes to securing access/availability to rare disease therapies; new initiatives at both global, regional and country level to support orphan discovery, development and availability; new approaches to address the challenges of developing orphan medicinal products and rare disease therapies in times of austerity; examples of re-purposing of drugs for rare diseases.
  • Theme 6: Beyond Medical Care. Research or studies identifying the specific social challenges of rare diseases; innovative solutions, services and programmes that address the social and other non-medical  needs of rare disease patients; innovative schemes that may serve as models for promoting independent living; personal experiences of service users; methodologies and programmes for the training of social services providers; research or studies on the benefits for patients and families of respite, therapeutic recreation and adapted housing.
  • Theme 7: Rare Disease Patient Groups Innovations. Innovative strategies/approaches/services or projects which could potentially be useful to other patient groups/healthcare professionals/academia or which deserve to be promoted internationally and recognised by national and European authorities.
  • Theme 8: National Plans. National plans / strategies for rare diseases.
  • Theme 9: Other/open topic. What would you like to say about your disease, your actions, your vision?